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Diagnostic Curveballs

26 Thursday Apr 2018

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Maybe it’s because when I have discussions about diagnoses it’s usually with other members of the chronic illness community, but I’ve been equating diagnosis with answers for a long time. I’m used to posts where people are grateful, relieved to have a diagnosis of a chronic illness. To be honest, so was I – they gave me answers to symptoms that had been plaguing me since childhood. “You have asthma”; Oh, that’s why I can’t breathe deeply without coughing. “You have Ehlers-Danlos Syndrome”; Ah, that would explain the constant pain and loose joints. “You have POTS”; Yeah, I’d figured that one out too due to the tachycardia when I stand up. But not all diagnoses are answers to puzzles, but puzzles themselves – as I am finding out.

Dear body, please stop.

2018 has been a ridiculous ride of hospitals and new things turning up so far, mostly within a 10 week period. With housing stress and overwhelming anxiety being my baseline this isn’t ideal, but I thought I was coping until a week or so ago. Being diagnosed with heart failure at 32 was a bit of a shock but the fog quickly cleared and I realised it didn’t really change anything except how I viewed my body’s need for rest and recovery (in a more sympathetic light, by the way – I struggled before with the psychological need to “shake off” the fatigue, especially when confronted with articles about other EDS patients who ran marathons or “didn’t let their condition stop them”). You can’t really argue with heart failure. Even I, who likes to argue with everything and everyone, am trying my hardest not to argue with it.

Can’t we have a one-in-one-out policy?

Then came the Central Sleep Apnea, which was more of a surprise. I did a sleep study in November and the results were revealed to me earlier this month. I guessed I had some degree of Obstructive Sleep Apnea, and was prepared to be told to lose a little weight, or to see about getting my adenoids out or something but no – it’s my brain failing to do its basic job of keeping me breathing. *facade drops slightly* Stupid body, stupid brain, why is so much going on at once? Oh well, CPAP therapy trial coming up, hopefully that will improve my fatigue by a fraction…

*MARCHING BAND INTERRUPTS TRAIN OF POSITIVITY TO DELIVER MORE TEST RESULTS*

Oh good, more unwanted news. My prolactin levels are approximately 25 times higher than they should be, which was unexpected considering the lack of symptoms (aside from the occasional uh, leaky boob). High prolactin levels can be caused by stress, a side effect of medications (notably older generation anti-psychotics), or a small brain tumour in the pituitary gland called a Prolactinoma. My GP suspects the latter due to the high levels of prolactin, and the fact I don’t take regular prolactin-increasing medications. There will be a scan soon, with an urgent request sent by my GP, then whatever treatment follows. Whatever it is, I need to get my levels down as prolactin levels that high can cause a loss of bone density which I’m already susceptible to. I’m not overly alarmed, but I am weary of my body ramping up its trickery.

And I’m annoyed. Very, very annoyed. It’s just too much now. My diagnosis list reads like someone typed “fatigue” into Google and wrote down all the causes. It’s getting to the point where I’m scared to talk openly about my health because it’s just so ridiculously hyperbolic at the moment and I don’t want to start causing eye-rolls and “oh great, Nina is talking about their health issues again” with every additional, bloody stupid, and unconnected diagnosis. It’s just more questions (“is this obscure co-morbid condition causing Central Sleep Apnea?” “is taking an anti-emetic every week or so enough to ramp up my prolactin levels?”), when what I’m used to getting from a diagnosis is answers. I feel like I need a chart on my wall like in dramas about over-involved investigative journalists, with each condition and symptom connected by coloured yarn, in order to keep track of what’s going on. And this is on top of the ever-present housing stress. No wonder I have trouble getting to sleep.

Thanks for letting me get that off my chest. Normal service will resume soon.

 

For Valentines Day I got a broken heart.

16 Friday Feb 2018

Posted by in Blog, Disability

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Well, I got the answer to why my fatigue has been getting worse and worse even when my pain is manageable, I’m preserving energy by using the powerchair, and my POTS symptoms are relatively well controlled. On Valentines Day I got was a call from my cardiologist. I mentioned being so frustrated with my current level of fatigue, and that I was considering going to a private specialist. “Well, I could refer you”, he said , “but most of the patients I refer there have hypertension due to stress and fatigue due to burnout, they’re working too hard. You’re fatigued because your heart isn’t pumping effectively. Didn’t you get the letter?” (I had not gotten the letter.)
He calmly explained that they’re recently seeing this kind of cardiac fatigue in some patients, but needed to set up a research group in order to work out what’s causing it and how to treat it, if it can be treated it all. He also told me to start taking CoEnzymeQ10 at a very high dose to try and improve fatigue and retain heart function before my next appointment, when we’ll discuss more treatment options for this and the autonomic dysfunction (both very experimental areas at the moment – trust me so be so bloody niche).

fleurs

I told my friend about the CO2 problem, and she decided I was a plant. I live on photosynthesis.

The next day it got scary, as the letter arrived. It’s easier to take daunting news when it’s coming from a lovely, cheery consultant on the phone, but there’s nothing comforting or reassuring about a page of test results. I’m in heart failure which is causing abnormally high levels of CO2 in my bloodstream, as ineffective pumping action means it doesn’t leave my body at the normal rate. I’m glad I got the phone call first, because it meant the results were easier to decode and I knew I wasn’t in imminent danger because of my cardiologist’s tone, but my overall feeling throughout the day was still one of being scared and anxious, and to an extent it still is. I’ve never had to try and take in a diagnosis before like this, I’m not used to answers coming with other implications; when I was diagnosed with Ehlers-Danlos Syndrome I already knew something was wrong and finding out what it was and therefore being able to access treatment options was fantastic. Here, I didn’t know anything was wrong other than extreme fatigue, which I’d presumed was connected to the EDS/autonomic borkery; it might still be connected, we’ll see what the research turns out, although it could take literally years.

Heart failure at 32. Well, I’ve faced tougher things.

Here’s what I’ve learnt in the last day of nail-chewing and sporadic Googling:
Heart failure isn’t necessarily a death sentence, it’s a technical term for when the heart is not pumping effectively – sometimes due to thickened muscle, sometimes due to cardiomyopathy – in my case it’s still a mystery as to what’s causing it, but we know it isn’t any of the usual suspects, and we’re not expecting it to progress quickly.

I think this is going to be one of those “several stages of dealing” things. I’ve felt alienated from my body for the last couple of days, like something about it has fundamentally changed although of course all that’s really changed is what I know about it. Today I’m focussing on what I know:
I know I feel incredibly grateful that back in 2015 my local hospital’s cardiology department referred me to a specialist heart centre because they themselves didn’t know much about autonomic problems. I know I’m not panicking, because my cardiologist isn’t panicking. I know I don’t want to tell my mum. I know what’s wrong now.